I’ve been so caught up with performing SIRvice I’ve neglected a far more important thing. My cousin is running a half-marathon in order to help the Tourette Syndrome Association raise money because my niece has TS. Here’s what my sister-in-law has to say:
Tourette Syndrome is no laughing matter!
Please sponsor my cousin who is running a half marathon on behalf of my daughter to raise money for the Tourette Syndrome Association!
As a teenager, I remember watching an episode of Maury Povich where they were showing kids doing bizarre things. Apparently they had this strange disorder called Tourette Syndrome. I’ve seen numerous characters portrayed on TV (remember Ally McBeal?), in movies and comedians, making fun of Tourette Syndrome. Never in my wildest dreams would I have guessed that one of MY children would be born with this nuerobiological disorder! But that’s exactly what happened! In December of 2001 in just a matter of weeks, my well adjusted, popular, happy go lucky 8 year old daughter started jerking her head repeatedly. It caused her so much pain yet she couldn’t stop doing it. Then she started uttering “sh!t” under breath over and over again. No amount of punishing or time outs would make her stop. When she started having explosive outbursts of anger we knew something was wrong. It took almost a year of waiting lists, appointments, a pediatrician, a psychologist and a neurologist to give us our answer we did NOT want to hear. My daughter has Tourette Syndrome. School became difficult for her. She lost friends. She was being bullied. she was in pain from the repeated use of muscles which werent designed to be used the way they were. She was depressed. She was having rage episodes. We couldn’t bring her with us in public as that just made things worse. When we did bring her places I usually came home in tears. Hurt by the way people, stared at her, mocked her, laughed at her. Adults, children, teenagers, the elderly, grandmothers, you name it, we’ve been bullied by them. We’ve even been discriminated against. She was asked to leave a tap class at a studio she had been dancing at for YEARS. They said a noise she was making was distracting (a noise that sounded like a hiccup was too distracting for a TAP class!!!???). We’ve had to leave movie theaters. We’ve even been verbally assaulted at Disneyland.
More important than these social issues, Tourette Syndrome HURTS. Katelynn has TMJ now from her jaw muscles being over used. She has headaches and eye strain from days when those muscles are over used. She has had back pain and neck pain.
Some days she has rage episodes. Many people with TS experience this. Following one of these episodes Katelynn experiences and extreme amount of guilt and slips into depression and doesn’t get out of bed!
Despite these challenges, Katelynn is a shining light for any one who knows her. She’s truly is an inspiration. She loves instantly and without judgment. She is the most steadfast and best friend anyone could have. She is selfless and funny and has a joy for life that is rarely seen.
My saving grace during those early years was the Tourette Syndrome Association. They were a light in a very dark tunnel. For FREE, they gave me very much needed support. They gave me the tools to navigate the SST process in the public schools so that we could get an 504 Plan for my daughter. They gave me resources on how to educate everyone we came across. they do in service sessions at schools for teachers and kids. They pointed me to doctors, gave me access to the newest research in drug therapies and treatments. The TSA gave me ways to talk to my daughter about Tourette Syndrome to help build her self esteem. They gave ME the knowledge I needed to educate even our very own doctors!
The TSA funds research to find a cause and cure for TS. They also do a fabulous job of raising awareness of what TS is. The recent shows you’ve seen on Oprah and HBO can all be attributed the TSA.
We very much want to give back! My cousin is training hard to run this half marathon. If you have it on your heart, please donate to this cause! If you cant donate at this time, that’s OK, but please spread the word and share the link below on all of your social networking sites!
I screwed up folks. I should have posted this A WHILE AGO. I didn’t. Right now, however, my cousin is in the home stretch of reaching her goal. Because of my neglect I wanted to make sure that on this day we push her over the top, reach the goal, and help the TSA as well as letting everyone no that Tourette Syndrome is not a joke.
If you can just donate one dollar it could make a difference.
Thank you for your time.